Caregiver support – putting caregivers first

Becoming a caregiver was not something I ever planned for. The kind of crisis caused by a cancer diagnosis in a family? Not something at the front of my mind as Laura and I made our wedding vows. With two small children I was counting on a couple of broken bones. Or perhaps a scary fever. I never imagined that with two kids under five, our family would be thrown into turmoil by breast cancer.

Inflight safety

It’s like that with flying too. Go to the airport. Get on an airplane. Land. Forget the sunscreen. Burn. Return home. Hooray! Nobody expects to need their seatbelt – let alone the life vest stowed under their seat. That’s why inflight safety videos are so laughable. Here’s a particularly  funny one from Southwest Airlines:

I’ve heard them so many times I don’t listen anymore. Recently, however, something struck me. There’s a profound wisdom in these videos. Check it out – this one is cued to a part that’s really important for caregivers to hear:

“Be sure to secure and adjust your own mask before helping others…”

Pretty simple right?  It makes sense. Once you look after yourself, then you are able to truly help others. When it comes to catastrophic events, selflessness can lead to martyrdom. This may seem heroic, but frequently just results in more people getting hurt.

Getting pounded? Get grounded

Out surfing one day, a friend and I got caught in a current. We were cycling from being pushed into some nasty rocks and heavily breaking waves. This was in a spot with a history of drownings no less. Exhausted, I managed to break the cycle. My buddy started shouting for help. He had a cramp and was panicking. Instead of plunging back into the washing machine he was trapped in, I took a couple of moments. I caught my breath and got my wits back.  I shouted instructions of how to beat the current. He got out okay. I intuitively realized that I had to take care of myself before I could help my buddy.

Caregiving through crisis

A cancer diagnosis isn’t a plane crash. But it sure felt like one for us. When Laura was sick, I put everything on hold. Her health became my central focus. Everything in my life – my career, my health, my feelings became secondary. I wanted to save Laura. I didn’t realize that I couldn’t cure her. My role was support. In order to do that well I had to ground myself first. I didn’t. Metaphorically speaking I didn’t “secure and adjust” my own mask. It worked at first. In the end it wasn’t sustainable. I imploded. The impacts of that implosion were terrible.

Caregivers’ needs are important too

I looked for support for myself. Caregiver support offered by most breast cancer organizations focuses on how caregivers can support people on their breast cancer journey. It makes sense. People with critical illness are their focus. Typically caregiver information would contain a small note: “Try to find time to take care of yourself.” These seemed tacked on with no indication of how caregivers might actually engage in self-care during a crisis. End result? I felt like an afterthought.

A new model of caregiver support is needed

Over the next several months I’ll use this blog to discuss caregiving. I’ll share personal reflections on my caregiving journey. And, more importantly, I’ll explore how caregivers can take care of themselves during and after a medical crisis.  This will all be peppered with some fun videos. Check back often and share this with those who might need it!

Cheers!

Jim